How do you get on a liver transplant list?

[jwillyy]

I have been reading this forum and appreciate the care shown by you all. My liver is damaged @ class 3/4 fibrosis per biopsy.  Ive been taken off peg w/rebo after 1 week due to depression.  Dr. wants me on paxil then restart peg. Dr. feels there is no need to get on a transplant list. but others concerned tell me to get on a list asap. i am just a carpenter that drives a school bus as a benefited job. im not an educated Dr. so I am helpless in someones care to trust to put me on a list when he feels it is time. one week of therapy was really hard for me. I dont know how i can support my family while needing so much sleep. your input will be helpful i know & i will thank you in advance. Jwillyy

[mtm50]

after finding out 5/01 that i have had hep c since sometime in late 1980,a biop was done and then another in 6/o5,on 8/23/07 a doctor at umc las vegas nv advised to relocate,so off to pa i moved.the nv doctor said my liver ia 1/a class 4 and i should be  on a list,my question is how to go about getting on this list here in pa , since university of pa does do liver transplants. if this web or anyone reading this is able to assist me with information on the path needed for my journey, well for certain you most likely would be saving a life, mine along with anyone else in need such information. thank you. mtm50

[Mr Liver]

U of Penn used to do liver transplants. I did not know they had discontinued ? Anyway, one of the top liver transplant centers in the world is at the U of Pittsburgh. Dr Starzl who did the world's first tp in Denver left to start the liver program at U of Pitt. To get on the list requires a referral from a doctor, generally. You then undergo a series of tests to see if you indeed qualify for a transplant. The hospital's transplant committee has the final say on listing. They  follow the guidelines set forth in the UNOS (United Network for Organ Sharing) regulations which can be found online.

Best of luck,
Mr Liver

[mikesimon]

Starzl Institute link:   http://www.upmc.com/Services/TransplantationServices/StarzlInstitute/

[orphanedhawk]

LOOK at the date on this post!!!! I don't get it. Why is it here?

mtm: My understanding is you have to be rid of the virus to get one. To get on a list you need a heptologist and insurance. Do a search on MELD

[mikesimon]

If your understanding is that you cannot get a transplant if you have active HCV then your understanding is incorrect. The majority of transplants are done for patients whose underlying disease is hepatitis c. And people without private insurance can get listed and transplanted - I know several who have. Mike

[orphanedhawk]

Thanks. I've been mistaken before and I'm sure this won't be the last time.
     I thought that you have to do tx and be SVR before you can get a transplant or the new liver would become infected quickly.

  My heptologist wanted to do labs and put me on a transplant list since I have a decompensated liver.  But he said I had to get insurance first.
( He actually doesn't know much about the money side of doing these things. He's too busy with research/doing surgeries,/running around to clinics, etc, part of CPMC, Gish's group)
   I'd love to just be on a list although I'm aiming towards regeneration of my liver. Any information you'd like to share would be more than gratefully appreciated.
       Thanks again.                      OH

[mikesimon]

It would be best to clear prior to transplant but most people don't as far as I know. SVR is not a prerequisite to transplant. If you don't have private insurance there are a lot of hurdles to go through to get the necessary coverage through the government. I haven't dealt with any of that stuff so I can't help you there. I do know people who have gotten livers and they didn't have private insurance. When I went to get evaluated I was in a room full of people who looked quite exasperated while filling out forms etc. I just started looking at the handful of forms they gave me when my name was called. I followed a woman into a room and she took the paperwork from me and said that my insurance was the best and I didn't need to do any of the paperwork. So I don't have a clue how to begin the process but a transplant center would be able to get you started at least - if you need a transplant and I haven't gotten the impression that your that far along. The transplanted liver is reinfected universally or almost so. The response to treatment can change with a new liver so some people who didn't respond before did after and vice versa. It's better to clear before but it's not required. I treated after transplant and I cleared albeit on my third try. But, it can be done though not easily by any means. That's about all I know. Mike

[maljon51]

My husband had a liver transplant one year ago after being diagnosed with hep c which he had for over 30 years without being diagnosed.  The only insurance he had was medicaid, which unfortunately in our state had never paid for an adult liver transplant.  I started researching and calling people and ran into a beauracracy you would not believe.  In the majority of states medicaid will pay for transplants, but not all.  Go on line to your states medicaid website and you can find out.  Our problem was that the state had a law that stated liver transplants were covered, but there were no hospitals that would accept the amount they would pay.  My husband's hepatologist was terrific and fought with me alll the way.  After a year of trying to get the law changed, and her telling us that he only had a matter of weeks to live, his parents mortgaged their home and we negotiated with the hospital to lower the price of the transplant to an amount we could pay.  God was with us and they finally agreed to do the procedure for less than $100,000.  My advice is to get a list of transplant hospitals and start with the ones closest to you to get alternative financing, help with getting medicaid, etc.  The main thing is don't give up.  There is always one more thing you can do and one more person to talk to.  We finally got the o.k. from the CEO of the hospital, after one of his underlings told me and the transplant team that there was no way they would give h im a transplant.  Now his hep C is back and we are fighting the same clinic to try and get treatment, or at least to find out if it is a viable option.  Don't give up and talk to everybody you meet for help.  There is also a terrific organization in Memphis, TN named National Foundation for Transplants that will help you and your family raise money for a transplant and meds.  Best of luck.

[maljon51]

One more thing, the law in our state has not changed, and liver transplants are paid for at the same rate as other state's medicaid pays for them.  So even though it didn't help us, at least now the people of our state will be afforded the same medical care as surrounding states.

[Bill1950]

It seems that some people have waited so long to get a transplant that they don't survive the operation.  I know one guy like that well.  But OTOH I know of others who have done just fine.  How long were you on the waiting list?

I have a bit unusual blood type, A Positive, that may cause me problems.  Does anyone know how your blood type affects your odds?
Bill

[mikesimon]

BLOOD TYPE COMPATIBILITY CHART FOR LIVER TRANSPLANT


Blood Type                Can receive liver from               Generally can donate a liver to
O                                      O                                                          O, A, B, AB
A                                      A, O                                                 A, AB
B                                      B, O                                                 B, AB
AB                                    O, A, B, AB                                          AB

DISTRIBUTION OF BLOOD TYPES
O Positive 37%
O Negative 6%
A Positive 34%
A Negative 6%
B Positive 10%
B Negative 2%
AB Positve 4%
AB Negative 1

[Bill1950]

Thanks Mike,
You meant that if you are A Positive that you work with A Negative?  I had no idea.  I looked somewhere and noticed that A Positive is not a real common blood type.  Maybe I was looking at a website about blood transfusions and that may be different than what is needed for a transplant.
Bill

[Bill1950]

Thanks Mike,
You meant that if you are A Positive that you work with A Negative?  I had no idea.  I looked somewhere and noticed that A Positive is not a real common blood type.  Maybe I was looking at a website about blood transfusions and that may be different than what is needed for a transplant.
Bill

[mikesimon]

Blood compatibility for liver transplant is not the same as it is for blood transfusion. As you can see from the chart, the easiest type to get a liver for is AB who can get a liver from type A, B, AB and O. Type O is the hardest to get a liver for because a type O must receive a liver from a type O donor only. But, a type O liver can go to any type recipient. Mike

[Bill1950]

I would never have known.  Sure is different from transfusion compatability.  

I have been feeling terrible for the last month or so, two years ago I was Stage 2 Grade 3 but may be higher now.  Something is going on though, I feel boated, stuffy on my right side and appetite is strange.  I have an appointment tomorrow with a new doc so maybe I will find out something.
Bill

[micki123]

hi, my name is michelle, im only 37 and i have chronic liver disease, i dont know much about it, but i know its bad.  i have 2 young children, i dont want to die, i want to watch my children grow up, please can you help me, i want to go on the transplant list. i dont care how long it takes, but im too young to die, please please help me.  i started drinking heavy when i was 21, due to my childhood, and sexual abuse, i dealt with my problem through alcohol instead of getting the proper help that i needed. ive always been on my own, didnt have parents, brought up in care. i dont drink anymore, i do get help now from dhi, but i only have half a liver, can you help?

[micki123]

hi, its michelle again, i havent got no money to have a transplant, is there a charity that can help me?

[meki]

micki123/Michelle:

First - the post you just posted to is extremely old... It was started I think in 2002 - which means you probably googled it - and posted to it.

There are a few folks here who know about liver transplants and --- they can help you with at least pointing you in the right direction.

No one is here to judge - so your past is no concern to us. OK?

Please repost your question to the main forum. In it's own post - OK?

And someone should be able to help you.

Meki